Three Years After Chemo: A Look Back at the Toughest 6 Months of my Life

It’s almost the third anniversary of the day I started chemotherapy. It has been three years since chemo went from being something that my grandfather did when he was losing his life to lung cancer…to being something that I had to do to save my own.

It lasted for six months.

When I think about the enormity of that experience and its defining effect on my biography, it’s hard to believe that it can be fully encapsulated in a short hyphen between January 2015 and July 2015. That’s only half a year. That’s shorter than a pregnancy.

But when you’re pumping poison into your veins on a bi-weekly basis, you start to measure time differently.

You’re measuring the time between lying on the floor on a mattress in the living room and going back to lie down in your bed. (Healthy folks call that a “day.”) You’re measuring the time between weekly oncologist visits. You’re measuring the time between meals you’re forcing yourself to eat. You’re measuring the time between when you start to feel a little bit better and when you have to go back for more poison.

I was dealt the cruel hand of starting out with a treatment plan calling for three months of chemo that suddenly evolved into six months somewhere around the middle of the first three. Time seems to move a lot slower when you think you’re halfway done with something and it turns out that you’re further back than where you were when you started.

When other people find out you had chemo, you get instant credibility. You must be so strong. So resilient. It’s unimaginable having to go through that. They can’t believe you actually did it.

Chemo 10 of 12. No eyebrows is a great look.

The distance from the chemo experience and the relative lack of reoccurence scares in its wake has led me to sometimes rewrite the narrative in my mind. I think back to how it “wasn’t really that bad” and that maybe I don’t even deserve to claim the vaunted title of cancer survivor, with all its rights and privileges and instant respect. There are so many others who have it so much worse and are fighting so much harder. But that’s no way to honor my own struggle or the struggle of anyone who battles cancer. Chemo is chemo. We were all worthy opponents and we are now blessed and thankful survivors.

But heroism and strength aren’t exhibited simply by doing something that you’re forced to do. It’s the way you endure it that defines you, and there’s something about cancer — for all its wickedness — that seems to bring out the best in its victims.

You are a cancer survivor long before you can actually claim to have survived cancer. Chemo puts you in survival mode.

No matter how much time has passed, there are things about chemo that I will never forget. Dreading the appointment all morning. My wife coming home early from work to join me for the treatment. Putting the chemo parking pass on our dashboard so we could park right by the hospital door. The distinct smell of the waiting room, where insipid daytime television droned on, oblivious to all the sick and worried people watching there. Being the youngest person — by a mile — in that waiting room.

Accessing my port for my first chemo treatment.

Unbuttoning the first few buttons of my shirt so the nurse could access my port for the day. The smell of the disinfectant solution applied to my port before they inserted the needle. The unpleasant pressure and pinch of the needle entering the foreign lump on my chest just above my heart. Watching the vial of blood fill up and knowing I wouldn’t get woozy like I did when they drew from my arm. Getting my port flushed and cramming animal crackers into my mouth to hide the taste of the saline.

Settling into our chemo room and putting the pink pillow behind my head on the less-than-comfortable recliner. Debating whether we would get the nice nurse or the cranky nurse. Getting the cranky nurse. The first round of painkillers and anti-nausea medication that sometimes had weird side effects that almost made me nauseous. The impossible-to-fight feeling of drowsiness that would overtake me. Drifting in and out of a weird sleep to the sounds of the “Arrested Development” episode that we watched on my laptop as a distraction.

Awaking more fully when it was time for the nurse to switch out the IV bag. Getting up to pee and dragging the IV stand behind me. The nauseating metallic taste of the “red devil” component of chemo that the nurse had to manually and all-too-slowly push into my IV line. Desperately munching more animal crackers and wondering how I got to this point and how I could possibly keep doing this.

Enduring the short drive home in a semi-nauseated, completely exhausted state. Collapsing into bed without knowing what time it was or what time it would be when I awoke. Finally waking up and feeling a tad more human. Hearing my wife making dinner in the kitchen, but knowing I wouldn’t really want to eat any of it.

I did that 12 times. I’m not sure if that sounds like a lot or a little, but it certainly felt like enough.

Now that I’m healthy, it’s easy to sometimes feel a disconnect from the person who went through all of that, even though it changed me forever in so many ways. I see the fading scar on my neck from my surgery and on my chest from my port, and I feel like someone who was abducted by aliens. In this case, the bodysnatcher was cancer. The scars help me know it wasn’t just a dream.

There was undeniably so much good that came out of this experience, and I think of that often. But when I reach the anniversary of various stages of my cancer fight, it’s important for me to remind myself of these grittier details and memories.

“Remission” too often means being remiss in my pledge to never take my good health for granted again.

And neither should you.

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On Two Years of Remission

They need to invent a new tense for talking about cancer.

Tense is a good word for it. It’s a tense tense. It’s an intense tense. It’s a past tense and a present tense. It’s an imperfect tense.

I had cancer. It’s gone now, by the grace of God. No evidence of disease. That’s the past tense.

But it’s never forgotten. Every time I get out of the shower, I see the fading scars on my chest and neck, and I remember. Every time something is out of the ordinary with my health—an innocuous cyst on my face or a prolonged mouth sore or an enlarged gland in my neck—I feel a creeping uncertainty and fear. Every time I hear a story about someone else who is receiving treatment or has lost the battle, I feel an overwhelming gratitude for the blessing of my continued life and my two years of remission.

That’s all present tense. This is how I live with cancer even after the cancer is gone: I remember the past. I value the present. And sometimes I fear for the future. No matter how much time goes by, a part of me will always be living cancer.

Cancer is an epic disruption. It disrupts your immune system and your plans. It disrupts your appetite and your mood. It disrupts your work and your play. It disrupts your priorities and your prayers. It disrupts the lives of everyone around you. It disrupted my life as a newlywed—first haunting me on my honeymoon and ultimately shaping the first year of my marriage.

It’s still disrupting me. First every three months, then every six months and now once a year, cancer bursts on the scene in the form of a CT scan. As I enter the machine, I’m instructed to hold my breath in order to get a clear reading. I don’t fully exhale until I get the results back days later, and I can be assured that the cancer itself remains in the past tense.

Getting a fully clear scan seems to be a struggle for me, as tiny ambiguities always seem to pop up, pulling me back into present tense. One time it was mysterious activity in my throat that could have been a cold or could have been something else. It was a cold. Another time it was an enlarged spleen that could have been something else but turned out to just be my larger-than-average spleen. For my most recent annual scan, the ambiguity still remains too tensely ambiguous for my tastes. A couple lymph nodes in my neck measured at 3.1 mm instead of within the safety of the 3.0 mark. One-tenth of a millimeter is enough to potentially blur the lines between past and present tense.

It was hard not to think about that while I waited for the doctor’s call with the results. When it comes to getting results from a doctor, voicemail is the enemy of good news. I missed his first call—both on my cell phone and my office phone—and he left a voicemail saying that he wanted to discuss my results. No rush, just wanted to chat about them. I missed his second call and had to wait a full 24 hours before I would hear from him again. Those 24 hours were spent in frenzied future tense, playing out terrifying scenarios in my mind and rhetorically asking questions of “what if?” and “what then?” and “why me?” and “how come?”

My doctor assures me that everything is fine, that my blood work is pristine and that the one-tenth of a millimeter could have numerous non-cancerous causes. I’m choosing to believe him. I recently had the aforementioned innocuous cyst removed from the side of my head. The lymph nodes could be reacting to that. I don’t feel like I’ve had a cold or illness, but my oncologist said I could be fighting something off and the lymph nodes were helping. He also said that if it was cancer, I would have other symptoms and the nodes probably would have grown a lot more than one-tenth of a millimeter in the year’s time between my scans. He said he will order another scan of my neck region when I see him for my usual checkup in four months, and we’ll see what that shows.

But today is the anniversary of my remission and there is still technically no evidence of disease. So I want to celebrate in the present tense. Cancer made me a better person. It made me more empathetic to the suffering of others—especially the invisible suffering that the stranger next to you might be experiencing before their hair falls out from chemo. I’m more attuned to the physical suffering that comes with side effects from treatment as well as the mental and emotional suffering that comes from being diagnosed with a terrible disease and all the side effects of uncertainty. I proudly wear the banner of a cancer survivor, but I know that so many others have endured or succumbed to so much worse.

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I am grateful every day for the fact that post-cancer life has returned me not just to normalcy but frequently to unqualified bliss. I’m married to a beautiful woman who lifted me up and made me smile during the most difficult moments of my life. We together conquered a challenge that most newly married couples cannot imagine, and

enduring that experience together has reduced many of the usual mountains of marriage to mere molehills.  We are now blessed with a beautiful daughter who is changing our lives in new ways every day and who represents a future for our family that is filled with boundless love and endless possibility.

Cancer will always be a part of my history and reality. But despite the wounds of the past and occasional fears for the future, the greatest takeaway from my cancer experience will always be a better understanding of the gift of the present.

Hope for 3: Marriage, Cancer and Pregnancy

When I first got the text from my friend Emily, I felt an immediate physical sensation of fear mixed with shock—the feeling of an instantaneous cold shower for all the blood in my veins.

The text asked for prayers for a friend of hers who had recently gotten married, recently become pregnant and recently been diagnosed with Hodgkin’s lymphoma. This woman—Mary—had inadvertently become the living embodiment of three of my greatest passions in life. Since getting married in 2014, my commitment to my wife has been the defining relationship in my life and something that I take an immense interest in nurturing. Since being diagnosed with Hodgkins and fighting it into remission throughout 2015, supporting cancer patients and sharing my experience as a survivor has become another personal mission. When my daughter was born in August 2016, becoming a father was the final life change to further refine my identity, goals and life purpose.

In a single text asking for my prayers—and without ever having met them or even yet knowing their names—I felt an instant kinship to Mary and her husband Tom and their growing baby Isla Rose. Since the day I learned of their story, they have been on my mind repeatedly and on my lips in prayer unceasingly.

I often talk about what a whirlwind the last three years of my life have been, with a marriage, a new house, a new job, a cancer fight, and a baby. As a firm believer in the axiom that God will never give you more than you can handle, I know this must be a pretty special family. If God, in His infinite wisdom, saw fit to throw them so many curve balls in rapid succession, they must be excellent hitters with a superb coaching staff.

That coaching staff is where the real miracle happens—when you realize that God didn’t give you more than you could handle precisely because He also gave you a strong network of people who will support you through these challenges. My post-cancer goal has been to join the coaching staff of anyone I encounter who is going through something similar.

If you are reading this, chances are that you were on my coaching staff, and I can never thank you enough. But the work isn’t done now that I’m in remission. I’m asking you to please spring back into action and help the Doherty family. There’s no denying they have a tough road ahead of them. Whether financially or spiritually or in another way you might think of, please join me in lifting up this family as they embark on an undeniably difficult journey. Pray for the health of their baby and a safe delivery. Pray that the cancer has not continued to spread within Mary. Pray that the treatment will be a success. Pray that Tom, with the difficult job of simultaneous caretaker to a newborn and a cancer patient, will get the support he needs and have the strength to persevere with a positive attitude. Just generally keep them in your prayers and consider making a donation to their GoFundMe account.

Reading their story makes me feel incredibly blessed for the way mine worked out and for the oodles of love and support I had along the way. Please help me to spread the word about their situation so that they can share my happy ending and recognize the enormous blessings that are ultimately born of suffering.

One Year of Remissioning

It was one year ago today that I got the news I had been waiting six months to hear. My cancer was in remission. While I won’t be considered by the medical community to be “cured” until August 2020, hearing that there was “no evidence of disease” still meant to me that I had conquered the most grueling personal challenge I had ever faced. It meant an end to weekly doctor’s appointments and blood tests. It meant a return to work and exercise and ramping back up to full strength. It meant getting my eyebrows back and at least a little more hair on my head. It meant that I was meant to face down cancer and live, when so many others were not so blessed.

It’s only one year later, but the world looks so much different to me today. The experience of fighting cancer changed me irrevocably and tremendously, but I didn’t expect my life to change all over again in my first year of remission.

Remission.

Now I’m no linguistic scholar, but I don’t think the parts of that word sound like they have anything to do with overcoming an illness. Nevertheless, it’s a rather apt word for how I’ve spent much of the past year.

I’ve been re-missioning.

In fact, I’m on a completely new and wonderful mission now–a life change that was almost as unexpected as my initial cancer diagnosis, but a billion times more joyful.

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As I type this post, my daughter Madeline is lying next to me in her rock ‘n play sleeper, baby-grunting and beginning to stir as she prepares to wake up for her eighth meal of the day. She turned three weeks old yesterday, and she’s the most perfect creation I’ve ever seen.

I can’t help but consider her to be a miracle–and I know that all children are miracles–but Maddie counts doubly so. Before I embarked on my treatment journey, three different doctors told me that chemotherapy had rendered greater men than me sterile, so I should probably make plans for my future fertility (and defy Catholic teaching on the subject). Theresa and I forged ahead in faith–trusting God’s plan for our family, even if that meant that Lumpy would make us a permanent party of two. When I received my remission news last year, the oncologist told us that even if we could get pregnant, we most likely wouldn’t be able to do so for a year and shouldn’t really even try until then. I guess that would be right now.

But just as God surprised us by making 2015 the Year of the Lump, he surprised us again by making 2016 the Year of the Bump. With that positive pregnancy test last December, we were instantly re-missioned.

I won’t pretend that Lumpy didn’t make a few cameo appearances in the past year. He came back like clockwork every three months when it was time for another scan and randomly haunted my psyche with worst-case scenarios: What if the cancer came back? What if I got sick after the baby came? What if the baby was sick? Is that another lump in my neck?

Fortunately none of these dramas ever played out in reality. My latest scan last week appears to be my cleanest yet. I’ve found a new oncologist who actually seems to care a lot about my health and who understands the importance of bedside manner when you’re dealing with cancer. Theresa gave birth to Maddie with no complications (read the epic tale!) and Maddie is as healthy as can be.

This entire pregnancy and year of remission has been filled with “What did I do to deserve this?” moments of gratitude–spawned from an experience that normally poses that question in the other direction. I know that I wouldn’t be here if I hadn’t been there, so I can’t help but look back at the marvelous timing of all these staggering life events with wonder and gratitude.

Perhaps it’s fitting that this is my 100th post on this blog–a blog that I started simply to chronicle the experience of my 30s and all the big moments I presumed would be heading my way in that decade. If I could send these 100 posts to my 29-year-old self, I wonder what he would make of it. Would he be afraid? Proud? Shocked? Perhaps he’d be most surprised that I actually kept it up.

As I turn 34 in three months, it would be tempting to hope that the latter half of my 30s is more predictable than the former. But these years have taught me the value of change, the importance of faith and the rewards of following a path that sometimes isn’t clear until you’re looking back at where you came from–and suddenly you’re happier than you’ve ever been before.

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Is it Time to Find a New Oncologist?

As I type this tonight–about two months from my one-year No Evidence of Disease remission anniversary–I find the thought almost comical: Why would I switch oncologists now? After all, I’ve already endured 12 rounds of chemo on my current doctor’s watch, put up with his idiosyncratic bedside manner, his maddening lack of clarity and availability, some mistakes in treatment and his Groundhog Day-like inability to remember the details of my case between visits.

After reading that last sentence, perhaps you’re wondering why I stuck with him in the first place. Well, the answer is largely because the hospital was conveniently located minutes from my house and my oncologist was supposed to be administering chemotherapy according to the marching orders of a highly respected lymphoma doctor at the University of Chicago who provided my second opinion and course of treatment. That doctor assured me that chemotherapy is chemotherapy no matter where you get it, and it seemed a lot smarter to get it five minutes from my house than to brave rush hour traffic to-and-from Hyde Park once a week for chemo sessions or checkups.

But I’m assuming that while the ABVD chemotherapy poisons are the same everywhere, the level of care from your oncologist can differ greatly from practice to practice. And in that department, my oncologist could surely use some…practice.

So what was the straw that broke the camel’s back? It happened earlier today. My wife and I had recently been chatting about how I am due for another PET or CT scan, as my oncologist had said he wanted me to get one every three months for the first year. For each of these scans, we have had to call his office to see if he still wanted me to get one and had to connect with him in order to get the scan ordered. (Is this normal? Or is the office supposed to call you to schedule your scans? I have no frame of reference for this beyond my dentist and my eye doctor, who always call or send a postcard when I’m due for some maintenance. Fellow cancer patients and caregivers: what has been your experience?)

Completing these scans is always a stressful experience for me–both because I hate getting stuck with needles and also because I always have a fear in the back of my mind that the scan won’t be clear and I’ll need more chemo or radiation or some other form of cancer-fighting torture. At the appointments to get the results of my three-month and six-month scans, it was clear that my oncologist had not even looked at the results before entering the room, which left my wife and I quivering in fear as he read them over in our presence. After the first scan, there was some ambiguity in my throat that required me to go back to the ENT who originally diagnosed my cancer. But my doc hadn’t seen this before I was in the room, so we got to watch him process it and ask me questions about my general health before he told us what was going on. It was terrible.

After my six-month scan, he reacted incredibly positively to the completely clear scan as he read it for the first time in front of us…because he thought this was my first scan after remission. When I complained about having to drink a disgusting contrast liquid before the scan, he told me that they didn’t need an abdominal scan because my lymphoma was in my neck, so I wouldn’t have to do that for any future scans. That’s nice, but we still got charged for the unnecessary abdominal scan that was clearly ordered because he wasn’t paying enough attention and didn’t bother to examine the details of my case.

But the back-breaking straw came today, when my wife once again called his office to find out if he still wanted me to get a nine-month scan and to get it scheduled. The office left a voicemail saying that we were supposed to have come back for a checkup after two months (which was never suggested to us on our last visit and had not previously been the protocol) and that my doc wanted me to get a scan of my chest, abdomen and pelvis.

Even casual readers of my cancer adventure will remember that my cancer presented as an enlarged lymph node in my neck. SO WHY IS HE NOW REQUESTING A SCAN OF EVERY LOCATION EXCEPT THE PLACE WHERE THE CANCER WAS?

I’m sorry. I’ll calm down. And turn off caps lock.

A quick scan of his waiting room tells me that he sees a lot of patients and that some of his patients probably have lymphoma. But I also know that I am probably one of the only ones who is under 35 and therefore perhaps a little more memorable than a lot of the older cancer patients he sees. But even if he couldn’t exactly remember the details of my case, shouldn’t he look at my chart a bit more carefully before ordering incredibly expensive scans that are meant to ensure that the cancer hasn’t returned?

So this is why I kind of want a new oncologist now. But I’m not sure that’s even an option for me. Do oncologists take on patients who are in remission and just come in for tuneup scans?

In the 17 months since Lumpy first entered my life, I have tried to be a resource for anyone who is dealing with similar health issues. I’ve tried to meticulously catalog my experiences in the hopes that it could bring comfort or knowledge or solidarity to others who find themselves fighting their own Lumpy.

But tonight I find myself somewhat frustrated and in need of advice. If you are reading this and have any experience with professional medicine or cancer treatment, I would love your feedback. Leave a comment or send me a message (roundingthirty at gmail dot com), and I would be very grateful for your insights.

Despite my frustration, I remain in good health–although perhaps gaining a bit too much pregnancy weight in solidarity with my pregnant wife–and richly blessed beyond measure. My oncologist and his staff did take good care of me throughout my treatment, but this latest development just feels like a logical breaking point, if it’s possible to switch to another doctor. Regardless of any of this, I feel so sure that all of the experiences that came from my cancer battle were oddly dressed blessings from God that fit perfectly into His plan and have prepared me for new and exciting challenges to come. Thank you for reading this and for all of your support!